Remove, Replenish, Repair, Restore

Remove, Replenish, Repair, Restore - this is the mantra modestly scribbled on the white board at the DAN! doctors office on our second visit to see him about the boys.  It has been a month and a half since we first took them in and we've done our best to keep up with the regimen of Vitamin C, Vitamin A, liquid vitamins, probiotics, fish oil, Calcium, DMG, Q10, and oh yeah, they have to be fed too.

When we first started I thought to myself, no problem they'll just take their vitamins and it won't be a big deal.  The first night I gave each one their probiotics to take with their milk.  I guess I take for granted that I know how to choke down a pill like it is second nature.  AJ took it like a wild man chewing his gel-cap up like it was steel.  Jonah's 20 minute ordeal of spitting up water and seeing the contents of his pill everywhere and not getting it anywhere in his body made me reconsider how to administer.  Opening the capsule and dumping it into a smoothie it is.  That is how lemon/berry/fish oil smoothies were born!

So, we've been doing all this since March and we took a morning off sometime in April so that Joe and I could take the boys to get their blood drawn for the Age food sensitivity screening and Hard Metals screening tests that I had purchased from my doctor in Westlake almost two years ago.  As you can see, the thought of getting blood taken was a deterrent for us.  AJ went first and was a trooper, Jonah, on the other hand was a little more resistant.  Let's face it, he screamed his head off.  Crying it hurts!  It hurts!  Take it out!  Take it out!  It got so bad that I had to take AJ outside and we could still hear him.  Of course this threw AJ into a spiral as well so here we were with two screaming kids, but the blood got collected and all was right with the world once more.

So, this past week we finally met with the doctor to get the blood results.  As we have always known, our boys are polar opposites.  Jonah's little body still seems to have absorption issues. His vitamin levels were very low, but on the bright side, so were his levels of hard metals including arsenic, lead, and mercury among others. 

Jonah's test results:

AJ on the other hand, has great vitamin levels, with one exception.  The downside being he is harboring very high levels of heavy metals.  So, after discussions with the doctor, we will likely start thinking about chelation treatments for him here in the next couple of months. 

AJ's test results:

So, we left the doctor's office with a whole new round of supplements, the next step in the probiotics, new and additional vitamins, and of course B12 shots that the boys must do twice per week.  We agreed to a division of duties, Joe will do the injections; I get to do the stool samples for their next round of tests.  I can't wait.  I'm sure to have a blog post about that.  

Did I mention you'll do anything for your children?

The Bio-Medical Stuff

So, finally we got ourselves in to see the local DAN (Defeat Autism Now) doctor in Ventura.  It was several years in the making.  We had heard about these practitioners and varying degrees of satisfaction with their results from other parents.  Bear in mind that all other reviews were for doctors in other areas, Los Angeles, Orange County, other parts of the country.  This doctor was different, he didn’t bleed us dry as some of the other parents had complained and had been a deterrent for us for a while, especially with two boys.  On more than one occasion we’ve had to decide who needed to go worse at the time.  Our doctor even gave us a 2-for-1 special!

Cost aside, we have been trying to educate ourselves for going on 4 years – (wow! it doesn’t seem like autism has been a part of our lives for that long).  We’ve looked at all of these things that could be underlying causes of the behaviors.  I’ve read up on gluten free/casein free diet, candida, chelation, B12 shots, and many other biomedical interventions for a while now. 

Try finding a pediatrician or regular family practitioner that will acknowledge that there is any merit to doing these things that doesn't look at you sideways, completely crazy, or totally stupid.  It can be an incredibly degrading experience to ask a doctor about many of these things.  They make you feel as though you don’t care about your children that somehow you are the one doing something wrong, or that just can’t cope with the fact that you have a child with these issues.  There is a real apathetic tendency in many of the doctors I have come across in the course of the last 8 years to write off your concerns as a parent, or dismiss your ability to intuitively know whether something makes sense for your child.

All of this has caused me to come the realization that we have to break a stigma.  Our society has this notion that doctors are all knowing.  The most refreshing thing I’ve come across in recent years is a pediatrician who is open to the fact that we don’t want to risk vaccinating our third child with the first two being on the spectrum, and hearing him admit he doesn’t know much about autism. 

Let’s face it – most of these doctors have been practicing as long as I’ve been alive; in some caseses longer.  It begs the question whether any of them have picked up a book in as long – or whether they realize that there are still people out there that have critical thinking skills and can read and don’t always accept the first answer given to them.  Mainstream medicine including doctors, medical practices, and hospitals are making decisions based upon what is in their best interest financially – not the best interest of their patient’s health.  That however is a topic for another day. 

The point I am trying to make here is that we as parents have a responsibility to be the advocates for our children to ensure the best possible care and best possible results for our children.  No one is going to look out for them the way we will as parents.  It has been my answer when people have asked me about doing the diet, and it holds true of any and all therapies.  Don’t rely on anyone else to tell you something is or is not working for your child.  You know your child better than anyone.

If anything, after our visit to the doctor I feel a little guilty.  I feel like we sat on the information that we have slowly gathered over the past few years too long.  It almost feels as though we should have done some of these things sooner.  We knew they needed to be done, or something needed to be done.  The reality is that critical piece was missing; the support and reassurance from a professional that respects and acknowledges our concerns and observations as parents.

Time will tell how these treatments go for the boys.  They are now 7 and 5, there are still a few critical years of development to go, with luck and a great support system we’ll turn them around and make a difference in their behaviors, their social lives, and their futures.